It was like falling into a dark abyss and with the fall came a sense of loss and disappointment. The first shooting pain hit at night, in bed, its full force made me cry out as my body jolted with the shock and severity of this pain; it is always like this, it strikes without any warning and always scares the living daylights out me. This was how my weekend started on Friday night.

Suddenly I was dealing with continuous severe shooting pains that jolted my body as they ran totally out of control. My stim wasn't stopping them or helping much at all. I had about 4 hours broken sleep that night, I became exhausted, stunned, traumatised all rolled into one. I had fallen back into the middle of the pain universe, back into the closed world of extreme pain and extreme limitations.

This was not where I thought I would be again so suddenly, I had gotten used to my new mobility since I started being able to walk a few steps each day without crutches back in April. Most days I only used one crutch most of the time and it made life much easier. I was also wearing sox with toes and on cold days two boots instead of two sandals, it was such a big achievement for me to be able to do something that most people take for granted. I was happy, I was not afraid to give an outing a go, I was unstoppable and proud of my achievements. In hindsight this was my undoing - too much activity and not enough pacing; analyzing the cause was easy, dealing with the brutal reality is what was difficult.

Suddenly my life had come to an abrupt halt, I had to keep very still, very quiet, any movement made the pain worse, the allodynia was out of control. I put the phone on silent, the thought of trying to talk to someone when I was in this much pain was too much. I set myself up in my favourite chair and accepted the help offered. I was now facing the unknown, how long would this flare up last? I was re -planning my month, working out what I could cancel and what I had to do.

I tried to escape from my pain by moving to another room or sitting outside but the 'travelling' made it worse and the pain stayed with me. Part of me wanted to panic but experience told me not to. On Saturday the shooting pains were unstoppable and were literally rolling along in succession, it had been a staggering 18 hours without respite. I had never experienced anything quite like this before, I felt borderline, was this the time to ring my pain management specialist and ask for help? It was now 1.38 am, not such a good idea! I cry again. I am back in the universe of pain where living is precarious, second by second I survive each pain and wait for it to slow down.

On the third day the pain slowed down for 6 hours but started again at midnight and 24 hours later it still persisted. This is a marathon I am in and I can't pull out. I feel a bit out of my depth with the continuous nature of this pain, 2016 had been a good year until now with only short pain flares that I seemed to be able to get on top of quickly.

So now I am facing many emotions, my confidence has plummeted and I feel overwhelmed, I need peace and quiet and I have trouble being part of anything that involves difficult decisions. I cannot confidently say that I will get back to walking again but I know when I regain my strength and the pain stops I will give it my best because that is all I can do, that is all any of us can do.

My December will be a time of minimal outings, saying no thank you to any social invitations, my CRPS is volatile at the moment, I need to acknowledge this and run with it, I need to stay strong, I know I can do this, I have done it all before.

So if someone asks me what I did on the weekend I will probably answer “not much” when in fact I have just completed and survived a major marathon and I am now dealing with post CRPS flare up trauma.

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Author

Rosemary EagleI am an artist www.rosemaryeagle.com
I also have CRPS. The life of CRPS pain & disability and my life as an artist are intrinsically entwined. I look forward to your feedback and comments.Rosemary Eagle